Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Mar 4, 2020
Date Accepted: Sep 2, 2020
Research Participant Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results from a Large Epidemiological Cohort
ABSTRACT
Background:
Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants.
Objective:
Focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants were conducted to better understand their preferences and concerns about research portals.
Methods:
CPS-3 participants were stratified on sex, race/ethnicity, age, and cancer status and randomly invited to participate. Focus groups used an exploratory case design with semi-structured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes.
Results:
Participants (n=59, 52% women, 88% white/non-Latinx) were favorably disposed towards using a research participant portal to take surveys, communicate with study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices.
Conclusions:
In addition to being beneficial to researchers, portals may also benefit participants, as long as the portal is secure and simple. Participants believe portals can provide convenient ways to report data and remain connected to the study.
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